Month: March 2015

I inherited from my grandmother a dishtowel. I think she called them tea towels. It is illustrated with sparkling, smiling, strutting tea kettles, cups, saucers, creamers, and sugar bowls. It looks like a thirties or forties animated Disney version of what happens in your kitchen while the household sleeps.

“Kitchen Parade” is printed around the four edges of the red border that frames the parade.

I don’t use this tea towel. And I didn’t inherit it in the sense that it was written in her Will, “Give my granddaughter Karen the Kitchen on Parade tea towel.” It was more that I was there when my mom and I cleaned out her apartment and I knew I wanted to keep it. Like the Doll that Hid The Toilet paper—it was an iconic remnant of her life as the Domestic Dame she was.

Then there was my mother’s sister, my Aunt Lucille, who, after sending my brother’s out to play after Thanksgiving dinner, told my cousin and I (we were 11) that we had to do the dishes (no dishwasher—greasy pots, pans, and dishes from a dinner for eight) because it was time to start getting used to the domestic drudgery that was our inheritance—our lot in life.

These three women formed a legacy of domesticity that was problematic for me—particularly that message from my aunt. It took me years to develop my own relationship with being a homemaker—to discover and embrace my voice, as it were, when it came to creating a home.

About three weeks ago, I bought a Shark vacuum cleaner—the Rocket. It’s awesome power in sucking up dust and the other detritus that accumulates from daily living is matched by its design. Without turning it off, I can detach the handle from the base and use it to suck up the stuff that lands in nooks and crannies, then reattach it to continue the sucking of the wider swaths of dust and detritus.

My grandmother had a state-of-the art thirties Hoover vacuum, that while powerful, was heavy and clunky and had a belt and bag that had to be replaced occasionally. You had to push the thing, sometimes with great effort, across a carpet.

Meanwhile, the Shark Rocket almost glides by itself. There is no bag to replace, and as far as I can tell, no belt. It is lightweight and compact. A well-designed tool for the task at hand.

The Shark helped me get through the weeks of terrifying uncertainty that started with a note about Tom’s high PSA count and ended with the course of treatment that has given us a sense of safety.

Cooking also got me through. I combined buttermilk and cream to make crème fraiche, made cinnamon ice cream laced with chopped pistachios, olive-oil poached tuna with olive and caper vinegarette, coq au vin, savory chicken, and leek and spinach soup topped with my homemade crème fraiche. Just to name a few.

I looked up a definition of cancer (because that’s what I do when a word overtakes me). The one that resonated was: an evil thing or condition that spreads destructively.

Home became the force against that evil thing. I wanted to make it a place that was nourishing, delicious, and free of detritus. A place that could banish the evil.

Homemaker. I embraced it.

Years ago, around the time that Jaws was in theaters scaring the peewadun (that’s my grandmother’s expression) out of audiences, I read about a skin diver in Tamales Bay who was paddling along on the surface when a great white shark came from below, grabbed him in its jaws, pulled him out of the water, shook him like a dog shakes a toy, then spat him out and swam away. The skin diver swam to shore. I believe he had only minor injuries if any at all.

I remember thinking at the time that that must have been a life-changing event for that skin diver—that there was the time before the shark, and the time after the shark.

I don’t think of the shark as death. I think of the shark as life, a reminder of our mortality, our vulnerability—a vulnerability that connects us to each other, as well as the living system of which we are a part.

Mortality is not only about recognizing our own lives have an end parenthesis, but about loving and the risk we take by loving—losing who we love. Grief is also the shark. It grabs us in its jaws without warning and holds unto us until it spits us out. Humans are famous for loving again after being in the jaws of grief. It is, perhaps, our greatest virtue.

Great white sharks became the villain that summer of Jaws. Everyone was interested in them. Sometime that summer, a great white shark (a baby one), was caught and sent to Steinhart Aquarium in San Francisco’s Golden Gate Park. It did not survive. Its body was put on display.

I visited the aquarium (this was when there was no entry fee). As people gathered around the body of this baby shark, I found myself feeling bad for it—that its dignity was being violated by the gawking curiosity. There was nothing villainous about it. It was just what it was. A being on the home we call Earth that was no longer a living being.

Someone somewhere wrote that humans aren’t learning to be spiritual, but rather spirits learning to be human. That’s what I believe. And that we become the most human when we are touched by our mortality—and that it is in our mortality that we find our immortality. Our lives are at the same time important because they are unique and a part of something larger than our individual lives. The grain of sand that makes the difference in the composition of the beach.

We find compassion through our mortality.

I want my country to embrace that compassion. To hold together the uniqueness of individuals while recognizing that we are a part of humanity, which is a grain of sand in the ecosystem that is the planet we inhabit.

Earth. Our home. We are its homemakers.

Note: I said in my last post that my cousin stayed home. It really was that she worked from home to change the world.

That’s how I ended my first blog entry of this year. Days after that, my cousin’s husband died. He had been diagnosed with ALS 17 months earlier. My cousin’s life and mine could not have been more different. She was a feminist who stayed at home to raise three children.

While I had a somewhat roller-coaster alternating with bumper-ride-of-it life, hers was fairly tranquil in its domesticity. Her husband and I could not have been more different as well. He was baffled by the emotional carnival-like rides of my life—I thought his was like riding the merry-go-round.

I wondered when he was diagnosed how he would deal with it. Well, all my perceptions of him were tossed to the winds. He looked at death directly and faced it with great courage, grace, and generosity. It was clear to me that what he saw in my cousin was a feminist who could stay at home. Together they were a good team that raised three children who have become lovely adults. They created a healthy family that has grown to include partners and two grandchildren.

It’s heartbreaking that his life with this family was cut short.

I had thought about writing something about this earlier, about his last journey ‘round the sun, but got wrapped up in the VDay production of A Memory A Monologue, A Rant, and A Prayer. Then, when I returned from dress rehearsal, the night before opening, Tom got the results of his PSA test. Normal is considered 2 to 4 ng/mL. His was 53.

I got little sleep that night. Fear had started to creep in. Blood tests, exams, and a biopsy. Then the diagnosis. He has prostate cancer. The PSA was so high, they were concerned that it had already metastasized. More fear as he got sent for bone scan and CAT scan, then the excruciating wait for results.

The scans were clear. The urologist suggested that the course of treatment would likely be radical prostatectomy, radiation, and hormone therapy. He referred us to a surgeon in Seattle because the local hospital (Port Angeles) did not have the equipment for a robotic (laproscopic) procedure.

Our appointment was at 9:30 on Monday. We woke at 5:00 to drive to Bainbridge Island where we caught the ferry. The surgeon was excellent. Clearly knew his stuff and very straightforward. He did not recommend surgery. Because of the high PSA, he said, it was almost certain that the cancer had spread microscopically to the surrounding tissue. The operation is really invasive, quite traumatic, and would likely leave cancer behind.

But, this was treatable. They have found, he said, that radiation therapy combined with hormone therapy has the same results as surgery combined with radiation and hormone therapy.

Crossing water, riding the ferry was a soothing way to take it all in. While surgery had held out the promise of cure, we were also both relieved that he didn’t have to go through its daunting consequences.

On Tuesday we visited the radiation oncologist, a delightfully sweet man who explained what would happen from here: twelve weeks of hormone therapy followed by 9 weeks (5 days a week) radiation therapy and continuing hormone therapy. I asked him what drew him to the specialty. He said he was fascinated by the physics of radiation.

That means to me that the combination of his skill in connecting with the patient and his understanding and curiosity with the physics of radiation puts Tom in very competent hands.

We’ll be done by Thanksgiving he said.

Before we left the center, we spoke with a Social Worker who is referred to as the Patient Navigator. What better title could there be. She got us set up with a support group, offered us transportation if we ever needed it, and convinced Tom to go ahead and get some sleep aids. It would take time for the level of fear and stress to be relieved, and sleep was important to bringing it down.

I am so impressed with our provider, Olympic Medical Center. I have dealt with the medical world off and on for a very long time, working as an administrator, being a hospice volunteer, being the navigator for my parents and in-laws as they wended their way through various medical systems.

It is a huge relief to have someone to rely on—someone who knows the ins and outs of the system we are a part of—a system that includes a navigator.

After five weeks of uncertainty, Tom and I are settling into hope. We now believe that he will be one of those men who die with prostate cancer, rather than from it.

I cannot leave this story without telling the backstory. The urologist and surgeon both think that this cancer has been going on for three to four years, which coincides with when we lost our health insurance. Because of the downturn in the economy, we could no longer afford the $2000 monthly premium (we had already increased the deductible twice) we could get through our business. The premium costs were high because insurance policies through a business could not exclude someone due to pre-existing condition. We were denied cheaper health insurance (basically catastrophic insurance) as individuals because of existing conditions that included visiting a doctor once in the previous year for a minor illness or injury. The insurance offered little, actually. We would have been on the road to bankruptcy by the time it kicked in.

We rolled the dice because we had both been healthy. We didn’t have yearly tests. The Affordable Care Act kicked in a month before Tom was eligible for Medicare. It took us another eight months to find a doctor. We live in a rural area, so we had to wait while Olympic Medical Center geared up.

Had we discovered Tom’s cancer during the time we didn’t have health insurance, God only knows what we would have done. It is not only the cost that makes access to health care daunting, it is also finding places that will take you if you don’t have insurance. You are left alone to wend your way, looking at the daunting cost of each diagnostic procedure and treatment.

I find myself increasingly enraged when I hear talk about market-based medicine, replacing Medicare with vouchers, giving tax credits for medical savings plans. These are suggestions made by delusional people who have clearly never had to pay for their own health care, or who are so wealthy they don’t have to worry about paying for it.

Medical care is a system. A complicated one. I don’t need PSA tests, but they need to be part of our medical system. I am willing to pay the price for them because the human cost is worth it. It is the cost of living in a society that is humane.

We have figured out that a silo-based approach to technical infrastructure is expensive and inefficient. I worked on a project to implement an enterprise architecture at the California Administrative Offices of the Courts. It would allow one county’s court system to talk to all of California’s court system. Richard Alan Davis, the man who kidnapped and killed Polly Klass in 1996, was stopped by police with her in the car. But, because different counties’ information systems didn’t communicate with each other, he wasn’t flagged as a danger. If the systems had communicated, perhaps Polly Klass would be alive today.

It’s the same with our medical system. There is no freedom in not having access to health care. When I was the administrator for the geriatrics program at SFGH back in 1980, the goal was to train health care providers in a team approach to delivering health care. The team consisted of medical students, dental students, nursing students, pharmacy students, and social workers. Together they provided a complete view of the patient, rather than a symptom that could be cured or not.

It’s called health care. And that requires a system. The marketplace cannot provide that because its goal is to make a profit based on three months’ projections. Health care profitability has to be measured in a much different time line.

There are daunting times still ahead for Tom. I think for me, the most daunting thing is my sense of powerlessness. I am here to support him and love him, but I am powerless to fix it.

Once, I was awakened in the night with a visceral fear of losing him. I felt it throughout my body. Whatever numbness prevents us from imagining such a thing had abandoned me. What I couldn’t imagine was how I would survive such a loss.

I am back to believing that Tom and I will grow old together. Unless we can be Baucis and Philemon, one of us will be the one left behind. But that once again seems far in the future.

Our medical technology is very sophisticated in the way it can save and prolong life. But only if we have access to it. To those who have the power to dismantle what has been started with the ACA (as flawed as it is), you need to know that everyone must have access to a systematic approach to health care. No poor or middle class family can ever save enough in a medical savings account to pay the cost of a devastating illness. Catastrophic insurance is just that. Takes care of a catastrophe that might have been prevented had there been a health care system that was accessible regardless of income.

Health care is a right. Health care is freedom. I would ask those who have the power to dismantle or create a human health system to imagine the visceral reality of losing a loved one. Then imagine that that death did not have to happen had the loved one had access to a health care system that is measured in human costs, rather than one that is market driven.

I wore high-top tennis shoes for A Memory, A Monologue, A Rant, and A Prayer. I think they are still referred to as tennis shoes. I’ve wanted a pair for a very long time, would pick them up from the shelf in the shoe department, turn them this way and that, then return them to the shelf without even trying them on.

“You’re coming in from the garden,” the director suggested. “Do you have a pair of high tops?”

Finally, I had an excuse to buy high tops. I found them online for a mere $6.00.

You should know that though I have always wanted to garden, I am absolutely clueless when it comes to growing things. While my dogs and cats flourish with me, I have the distinct feeling that plants of all varieties know I appreciate them, but want me to appreciate them from afar. I don’t have the ear for their language.

I added a hat and flannel shirt to my costume. And then I put on the shoes. Magic shoes.

They were comfortable. They connected me to the ground I walked upon, whether the stage, the green room, or the muddied grass that surrounded the theatre. I believed I was a writer/mother/gardener/feminist who wrote, tore out articles that recorded the horrors of women used as spoils of war and everyday victims of “domestic” violence, sent them to my son, called him in the middle of the night and as he went into meetings to pitch ideas for writing to talk about the state of women in the world—and also worried and wondered: did I damage my son as a man and as a person with these horrors perpetrated by men.

She didn’t, this writer, Susan Miller. Her son seems fine. A good man. There was a light at the end of the hall in her home growing up, It signified safe passage. So she had a light at the end of the hall in the home in which she raised her growing son as a single mother.

I think it’s that light at the end of the hall—safe passage—that allows a child to grow, to flourish, to feel entitled to his or her story.

Many of our ancestors were burned as witches. Some for political reasons—it was a way to wrest property from them—others because they were connected to their female selves. For generations mothers tried to protect their daughters from suffering the same fate by teaching us to cover it up, go along, act as if we were powerless.

I think that legacy is changing. There were witches that did not get burned at the stake and their descendants, those like me, are finding our footing, our voices, our beating hearts—courage.

The word “courage” is from the Middle English. It denotes heart as the seat of feelings. In the Animal-Wise Tarot deck, the Cougar card means Coming into Your Own Power. Fill your heart with power knowing the time and circumstances are right to take charge of your life most effectively.

Something about those shoes. I wear them whenever I can now. So much better than those high heels that cripple our bodies. Sometimes we need to don a costume to realize that it isn’t a costume at all, but who we actually are.

I am the granddaughter of a witch they did not burn. I am not alone. With our beating hearts filled with power, our voices are speaking the truth of the human heart. Authentically. With compassion. And with the light turned on at the end of the hall.